KLS Coping Strategies

These are the coping strategies which KLS carers may find useful during episodes:

A carer should be at home and available for young KLS sufferers and even older ones when needed

Do not wake them up - except to try to encourage them to drink fluids if they are asleep for a very long time. If this is not possible and you are worried seek medical attention.

Keep them at home as much as possible, they may appear at times to be feeling normal when in an episode, but will not be.

Do not let them out alone since they will not be aware of danger crossing roads for example.

Have nobody else in the home apart from immediate family/loved ones if possible.

Be guided by moods.

Watch food intake and make sure they do not become dehydrated. Help them drink with a straw if they are too tired to lift their head to drink. Offer them nutrition drinks if necessary if they are not waking to eat.

Don't speak unless they want you to and then keep very quiet and calm and use simple words. They almost certainly will not be able to cope with answering questions.

Be prepared to sit and watch the same films over and over again with them.

Keep a diary - sometimes it helps to see what is happening and may be especially helpful if they do not have a diagnosis yet. PatientsLike Me Track Your Health may be useful to you for this.

When coming out of an episode be prepared for upset, frustration and anger.

Try not to get frustrated and upset by the feelings of helplessness- we all find this one the hardest!

Try not to worry....he/she will come out of an episode!

When beginning to come out of episode, driving them for a short car journey may be a good idea to start getting them to feel they are returning to normal life.

Be prepared that they may go into an episode at any time and have a plan with school or work.

In between episodes it is recommended that individuals with KLS have a regular sleep routine, avoid alcohol and contact with infectious people. It is useful to keep a sleep and symptom diary particularly before diagnosis.